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Heart Failure
So I'll try to make a long story as short as possible... Over the last 14 months I have had 3 heart attacks and have been in a handful of times for what felt like another one but they say no. During my last overnight that wasn't a heart attack they decided to do a test I hadn't done yet. It showed a "dead spot" as was explained to me. A week later they had me do a 2 day "viability test" which I included the results page from. Basically from what I understand and they way it was explained to me was that there is nothing they can do and that I should expect to deal with the pain for the rest of my life, however long that might be. Hence why I've sought out another opinion from Mayo but wont have my first appointment for a little more then 3 weeks from now. So i came across this group while looking through the website as the suggested during my appointment call and thought maybe somebody here might have some insight into this since looking around online almost requires a medical degree to understand and my current doctor isn't much help beyond there's nothing he can do for it. I spend most days in pain, like it feels like i'm having another and it's getting old fast. So if anyone has any insights or tips on how to alleviate any of it or tricks or can just explain to me in plain english why i should expect to be in pain everyday just so i can justify it to myself and maybe will help. Guess i don't know what to expect, just a way to vent i suppose cause i know the family is already worried enough and don't want to put more on them.
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@maddie3211 I don't know, thats just what Mayo told me when they made the appointment. That i would need my doctors referral and that it would take 2 weeks from there before it all cleared out. I did leave a message with my doc right after getting off the phone with them, his nurse returned the call and said that she would have a conversation with him and get back to me. I also mentioned about my continuing pain and when i should return to the er since the last time i was there they gave me a script for Vicodin for pain and told me i should expect it and that unless i hit 10\10 there isn't much to do and that the 10\10 would probably mean another HA was coming on. I mean it's bearable but just that. It's about a 7\10 currently and i've been learning to deal with it until i can get in and hopefully get some answers eventually.
@shawnb2020 Hi and i am also curious why so long when i went to Mayo Phoenix it was a referral from my Cardiologist and i actually went direct by Ambulance. Now i had to wait for the insurance approval for my transplant but they started the process just on my doctors referral. At first it was only an evaluation and i went home after the eval which was inpatient but my symptoms got worse and i went back thru the Mayo er and never left until it i ended up with my transplant. But during that period waiting to get approval from the Insurance i was already at Mayo. Now at the time i had Blue Cross Blue Shield i don't know if that made any difference or not. So my advice would be to go to the closest ER whenever the symptoms appear. I was already an established patient with a history of Heart issues. Im wondering now if my cardiologist at the time pushed it thru. I'm not sure about that part. Hang in there it will be worth it. I am so thankful for Mayo and what they did for me.
Have a Blessed Day
Dana
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2 Reactions@shawnb2020 and @sallygg1
Welcome indeed.
Best always,
s!
I have never like responses that start with "I know what you are feeling" because we can never understand what pain means to you both physically and the clear frustration that you are experiencing emotionally. I can tell you that I had good care from many doctors but I never felt hope until I walked into Mayo. The advice I got was consistent and I felt better while waiting for my transplant which happened 8 months ago. My heart was "totally shot" (apparently a medical term). I had similar palpitations as a result of my heart trying to catch up to the needs of the body. I also don't want to minimize your feelings on your EF number. I will share that it is just a number and to not read too much into it. Mine was at 9% and I walked 14,000 steps the day before my transplant.
@scottij First I would like to say I appreciate the way you worded your response. From there, it's not so much that I'm feeling any certain way about my EF I'm just basing my opinion from what other doctors have told me and from what I have read (and was able to understand lol) online. That usually anything under 30 is something to be concerned about and that after my second the doc I dealt with in the hospital refused to let me leave without a life vest. I suppose it wouldn't bother me so much if I was feeling "normal". Just over a year ago I was working 10-12 hours a day in usually outdoor or shop conditions and now I'll wake up at 7:30 for my morning handful of pills and by 10-11 I'm falling asleep where I'm sitting. Things I have always enjoyed doing just seem to take to much out of me to even want to bother. Even just walking around the house I feel my chest start pounding (really don't even need to be walking, has done it twice just typing this) and it's like hard to keep my eyes open. So I know EF is just a number and there are many different factors that will fall into how I feel no matter what that number says. But yes it does get frustrating. I'm not sure if mine is "totally shot" since they haven't told me much of anything. First I heard of heart failure was when the info packet from the company for the new pill i got put on a couple of weeks ago described it as only being used for heart failure and when I brought it up at my next visit he said yes that is why he gave it to me. Almost like I was supposed to know from his 2 minute phone call when he told me the result of my viability test was no viability and to keep my next appointment 2 weeks from then so he could explain it more which consisted of him telling me that whats done and dead is done and dead and that going back in would make no difference and other then the new med there wasn't anything he could do about it. Which is when i decided to seek out Mayo's opinion and help.